Sunday, March 25, 2012

Update Part III from the World's Worst Blogger

Two weeks after getting home from California, my son's antibiotics for his PANDAS ran out. This was propitious, because the worms do not do that well if a person is taking longterm antibiotics. Amazingly, the PANDAS was on the wane and then gone. We got our son back. He has gotten better and better with no recurrence, thank God. He can now run in from the edge of the sidewalk block of school all the way to his classroom by himself. He's no longer asking me if I'm still there over a hundred times a day. He's no longer afraid to go into the bathroom without me even in broad daylight. The panic attacks have stopped. He has completely stopped chewing his clothing. He is back to the same happy go lucky kid he was before.

I do not know how much hookworm had to do with his recovery from PANDAS. I do know that before we went to San Diego, there was no end in sight and that we were discussing with our pediatrician the possibility of medication with antibiotics daily until adulthood. My hunch is that hookworm has had a part in making him able to recover and sustaining it.

Teachers at school noticed that for the first time, he seemed less congested. This was an accomplishment given that he had a surgical procedure called turbinate reduction while he was having his tubes put it and it did absolutely nothing to reduce his congestion.

We have been working for years on teaching him to read. We got a great computer program called Funnix that is a Distar based program for teaching reading with phonics. Every lesson comes with a work sheet. At the beginning of us using this program, my son could barely hold the pencil by himself. He cried during every worksheet that it was too hard. I was holding his hand in mine to help him write. His hand was so weak that he had serious problems writing seven letter As on a line. He would write one by himself, would write one with me and I would end up holding his hand and writing the other five. As I mentioned in the previous entry, last spring I was told that there was a possibility that he would never be able to actually write using a pen or pencil, that we should consider assistive technology, using a computer for writing for life. This was after fours years of developmental preschool and three years of occupational therapy.

Three months after inoculation with hookworm, he was doing a lesson every day and writing out the entire worksheet by himself. I went to a meeting of his special education committee at school. They were astounded by what happened with him from Thanksgiving to after Christmas. He had made huge progress, over a year of progress in three months of his fine motor skill development. The OT was absolutely blown away. His special ed teacher was astounded. His writing skills have gone from barely being able to write his four letter name at all to being able to write six sentence stories by himself.`He is now at or above grade level with his neurotypical peers.

The amazing thing to us is that we weren't even considering how the worms would impact his autism and neurological issues. We were more concerned about the allergic component. Now there is no doubt in my mind that what has been going on with him has had a encephalitic component. Inflammation is the name of the game. This makes sense since the main biochemical treatment that gave him the ability to speak was very large doses of cod liver oil. Fish oil is extremely anti-inflammatory.

Allergy season is now underway in earnest in the DC metro area because of the freakishly early spring. My son has been able to skip days of antihistamines, has had no sneezing, red eyes or congestion as of yet. Of course, worse is to come but I'm hopeful that we're seeing a big improvement on the allergy front as the hookworms become established.

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